Rare Disease cohorts and registries

Join us for our upcoming Rare Disease Grand Round hosted by the King's Health Partners Rare Disease Network.

The King's Health Partners Rare Disease Network brings together research and clinical groups across the region, facilitating networking opportunities and creating a collaborative environment for cross organisational rare disease research​. By enhancing collaboration, scale, and impact of research, the network aims to attract future investment in translational rare diseases research​.

Don't miss this opportunity to join members of the King's Health Partners research and clinical community, and hear from experts involved in rare diseases research​.

This Grand Round will be held in partnership with the Guy's and St Thomas' NHS Foundation Trust Grand Round series. This will be an online event and the session will be recorded for later viewing on the KHP Learning Hub.

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Topics and speakers confirmed:

The Prospective Epidermolysis Bullosa Longitudinal Evaluation Study (PEBLES): a decade of rare disease natural history data
Prof Jemima Mellerio
Consultant Dermatologist and Honorary Professor of Paediatric Dermatology, St John’s Institute of Dermatology, Guy’s and St Thomas’ NHS Foundation Trust and King’s College London

Jemima is a Consultant Dermatologist and Honorary Professor of Paediatric Dermatology at St John’s Institute of Dermatology where she leads the national Adult Epidermolysis Bullosa (EB) Service. She also specialises in other genetic skin diseases and paediatric dermatology, and was previously the consultant dermatologist to the national Paediatric EB Service at Great Ormond Street. Her research focusses mainly on clinical aspects of EB including a long-term natural history prospective register study and clinical trials of emerging translational therapies.